The Dysferlin Registry Privacy Policy

The goal of our website, (the “Site”), is to provide access to various other websites that are specific to certain subtypes of Limb Girdle Muscular Dystrophy, or LGMD (each, a “Subtype Site”). As of now, the only Subtype Site is the 2B Cured Site for the LGMD2B and Miyoshi Myopathy (dysferlinopathy) community.

This Privacy Policy outlines the type of information the Site collects from users of the Site and how it may be used by us or shared with third parties. We reserve the right to modify this Privacy Policy at any time, and without prior notice, by posting amended terms on this Site. We encourage you to review this Privacy Policy periodically for any updates or changes, which will have an update effective date.

Each Subtype Site will contain its own Privacy Policies, which will differ from this Site’s policy. You will be required to read and agree to a Subtype Site’s Privacy Policy before becoming a member and using such site.

Information we collect

The Site collects your email, password and time zone. Your password will be encrypted.

How we use your information

We will use your email address and password for logging in and for site notifications. Your time zone will be used only to facilitate time display on the Site. We may also use the information you submit (1) for maintenance and operation of the Site, and to create the best possible tools and functionality for users of the Site, (2) in the case of an emergency or other circumstance that we determine requires a member of the management team to directly contact you and (3) as required by law or to comply with legal process. The Site will never release your information to any outside organization or third party unless required to do so by law.


A cookie is a small data file that often includes an anonymous, unique token, which is sent to your browser from a website’s computers and may be stored on your computer’s hard drive. Two types of cookies are required to use the Site:

Log Files & Web Beacons

The Site may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (IP) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the site, track the movement of users, and gather broad statistical information for aggregate use. IP addresses are not linked to personal information. The Site may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users. This information is not linked to person information. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.

Other security issues

We employ independent contractors, vendors and suppliers to provide specific services and products related to the Site or to the services provided on it, including performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users, and developing applications for the site and the services provided on it. These outside contractors may have limited access to information collected on the site, including protected health information and personally identifiable information. In the course of providing such products or services, such outside contractors will be contractually obligated to protect the privacy and security of all protected health information and personally identifiable information.

The Site may provide links to other websites that may be of interest. We are not responsible for the privacy practices or content of other such websites and we recommend that you read their privacy policies before providing any information to them.

Finally, users of the site should know that we take commercially reasonable technical precautions to help keep member data secure. You should keep in mind, however, that no internet transmission is ever 100% secure or error-free.

Questions about the Privacy Policy

If you have questions or comments about our Privacy Policy, please contact us at: